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Thyroid Cancer - TWICE!

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By MrsMoe


My Thyroid Cancer detection and treatment

In 1986 when I was 33, my then boyfriend was massaging my neck and shoulders when he suddenly said, "What the hell is THAT?"

"THAT" turned out to be an egg sized lump on the front side of my neck. I hadn't noticed it or felt it until he placed my hand over it. I don't know how I missed it, but I did.

Three days later I had already seen my primary care physician and he had gotten me an appointment with the eminent thryoid cancer specialist at the time. This specialist had written a book on the subject and had privileges at Deaconess Hospital in Boston, Mass. I couldn't be in better hands.

I had surgery immediately. From detection to surgery was less than two weeks. The lump was that large. Somehow, when I woke up and was told that it was cancer, I wasn't freaked out about it. I knew from my visits with the surgeon that thyroid cancer is one of the most highly operable cancers there is. It tends to remain localized and surgery - at the time - was the treatment of choice.

Only the cancerous side of my thyroid was removed. I still had the other side intact along with my parathyroid. I needed to take a replacement thyroid hormone for the rest of my life, but it's such a tiny pill and one that had good results for me.

Unfortunately, the scar I had on my neck was not a good one. At the time, unbeknownst to me, my weight loss was due to my thyroid disease and I was around 130 pounds. For me, that was pretty much skeletal. I had ZERO fat under my skin at my neck which happens to be a long one, and the surgical scar adhered to the structure under my skin.

It wasn't long before I was suffering from intense scar tissue INSIDE my throat and neck. I couldn't raise my head like most people could. This manifested in not being able to drink out of soda cans. Sounds stupid I know, but until it happens to you, you don't know how awful it is.

I also started choking on my food. My throat would spasm when I ate hot food - particularly (and I don't know why) anything to do with pasta. But most any food would make me choke when a spasm happened. Sometimes I would have a mouthful of milk or water or whatever and all of a sudden, I couldn't swallow it. More often than not, all I had to do was wait a few seconds and the spasm would pass. I would have to lower my head in order to swallow, but I'd be alright.

This choking did affect my social and work life. I wouldn't go out to eat with my friends, I wouldn't eat in the cafeteria at work, and I never partook of any foods that were offered at meetings - especially if I was one of the presenters. The scar itself was ugly enough (and large enough) that I probably made some scarf maker very rich with all the scarves I bought. I got very resourceful with tying and draping scarves. Turtlenecks were my favorites!

Fast forward to 2007. My new primary care physician is reviewing the paperwork sent over to her and she remarks to me during one visit that I need to have a follow up chest scan. I had some spots that were seen on one chest X-Ray (taken when I don't know, but notated that there should be follow-ups) and it had been three years since I had been checked.

I went right over to the hospital and had the X-Rays. The NEXT day she called me to tell me the chest spots were okay - nothing had grown, but the radiologist had noted a large shadow just out of sight in my neck. They wanted to do more tests. Next thing I know, I'm being referred to an endocrinologist and having an ultrasound of my neck. As soon as the ultrasound was over he said, "I need to do biopsies of your remaining thyroid gland." I figured I would have to go to the hospital and have novocaine or something. NOPE! He did it right then and there.

After he located the site with ultrasound, he simply stuck a long needle in my neck and withdrew the sample. He did this SIX times! It didn't really hurt that much, it was just the idea of what he was doing that kind of got to me. I was a little shaky when I finally stood up.

The results came back that I had thyroid cancer - AGAIN! Geez! The doctor explained to me that the treatment plan in 1986 was to remove the diseased gland only, but that now, they go ahead and remove the entire thyroid for just this reason. Quite a large percentage of partial thyroidectomies have to have completion thryoidectomies in later years.

I was actually not that upset. The doctor told me he was going to have the surgeon fix my neck at the same time! Wahoo! I was getting a neck lift for free! I had the surgery and the resulting scar IS much better than the one I had before. I no longer choke on my food and I can drink most of the way through a soda can. I still have a worse scar than most other people I've seen with the same operation. While I was nowhere near being as thin as I was in 1986, I still have no fat under the skin in my neck. So I do have what they refer to as a shelf scar. (See photo). I've learned to live with it though I do mourn the loss of my best feature.


Thyroid removal scar

Following surgery, I was to go through radioactive iodine therapy. This is where you are administered a radioactive pill. This whole process was very interesting to me. I'm an Engineer by education, so things like this are not as scary to me as they might be to others.

Since the thyroid gland uptakes iodine, the idea is to have a radioactive iodine pill given to you that will first go to any thyroid cells remaining in your body. The radioactiveness kills off the thyroid cells, and also shows up later during a full body scan. Any locations that show up are to be watched for growth.

Because your body will have iodine in it from your regular diet, you have to first go on an iodine free diet for 6 weeks. This is a lot harder than the actual surgery! There's iodine in just about everything.

Just to make my life truly a lot more fun, I developed a kidney stone and was sent to the hospital for a CAT scan. This scan was taken with contrast dye and guess what the dye is loaded with? IODINE! My iodine levels shot up off the charts. So - I had to do the iodine free diet for FOUR MONTHS! But finally, my levels were almost nil and I was cleared to go for the treatment.

You go to the hospital and are admitted to a very special room. This room is large and private. Halfway across the room is a tape that the nurses, doctors, and housekeepers cannot cross. Once you have taken the pill, you also cannot cross that line into their territory. They tell you to bring clothing that you don't care about, because when you're discharged, they take your clothes along with anything else you brought (magazines, reading glasses, EVERYTHING) and it is sent to a special room in the basement where it stays for a determined shelf life.

To administer this pill to you, you are visited by an entire team. Several nurses, a doctor of the day on the floor, and the specialist who brings you the radioactive iodine pill in a lead lined box. The specialist has a geiger counter with him! He first takes a reading of your body before the pill is administered. He takes this reading with you standing on an X marked spot, and him standing a predetermined distance away from you - behind the tape line on the floor. Then, he opens the lead lined box and shoves it to you on the floor with a yard stick. You take the (humongous) blue pill out of the box and close the lid tightly.

He tells you to take the pill with a LOT of water. This is a problem for me. Drinking large quantities causes me to choke a little - a nice little remnant of my previous scar tissue problem. While the choking has lessened significantly with the new surgery, some things still trigger it. But I do my best. I am told to open my mouth as wide as I can so at least two of the people present can see that I have truly swallowed the pill. I am amused by this whole process and they tell me I have made their day by being the easiest patient they have had in a very long time.

The radioactive specialist then spends a long time with me as I am full of questions my Engineering mind comes up with. He is impressed by my questions and is actually flattered with the attention I give him. He tells me most of the patients freak out about the whole thing, not knowing what exactly is going to happen and when the whole team shows up and they become aware of the radioactive aspect of the treatment - well things tend to go downhill from there.

A reading is taken with the geiger counter immediately after ingesting the pill, then again an hour later. You have to drink water like you've never drunk it before in order to get the reading down to a point where you can be safely discharged - typically one to three days later. I am a model patient and my reading the next morning is already low enough to be discharged. In spite of the fact you have ingested this pill, you are told you cannot be with children or pets for two days and not to sleep with your spouse for at least 4 days! Well - what exactly does that mean for ME? That was the first time I got a little wary of the whole thing, but the specialist talked it out with me and I was fine by the time my husband picked me up.

Some time later - a full body scan is done to see if there are any radioactive spots glowing anywhere in your body. They expect some to show in the neck area at the surgical site, but hopefully, nowhere else shows up. This was the worst scan I've ever had. They strap you down onto a table that is only about a foot wide and the scan takes about an hour and a half. Again, I was told I was one of the best patients they'd ever had. I can fully understand why some people would freak out after a half hour or so - that table and being strapped was so bad. But I'm one of those people who can go somewhere in their mind when necessary and I just closed my eyes and asked the attendant not to talk to me until it was over.

My results were excellent. Very little uptake in the neck region and virtually NONE elsewhere! Again, I am on a thyroid supplement for the rest of my life, and I have to take a huge supplement of calcium morning and evening (having to do with the parathyroid absence), but otherwise, I'm totally fine.

I'll admit, when I see people on TV shows talking about their thyroid cancer as though it is as dangerous as other cancers, I get a little annoyed. Alright, it's cancer, but it's NOTHING compared to breast cancer or even prostate cancer (also highly operable and survivable when detected and treated quickly - I should know, my husband went through prostate cancer 4 years ago - he's fine).

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MAYRAPINK profile image

MAYRAPINK  says:
3 months ago

i admire you so much

MrsMoe profile image

MrsMoe  says:
3 months ago

Thanks! It was an interesting experience, but truly nothing compared to the one my girlfriend is going through with breast cancer. (She's doing VERY well).

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